I called you today in desperation.
Yes, I am stressed and sadly you got to witness that in all it’s glory. Thankfully we will (hopefully) never meet. I ended today’s conversation in tears and there was so much I didn’t get to explain. The fact I even got to speak to you when both my children were in the same room as me is pretty amazing in itself. You probably think I am crazy so I hope this shows I am maybe not as crazy as you first thought. If I came across as emotional, stubborn, even perhaps agitated, I hope this letter makes you realise it wasn’t you I was getting at. I am just a mummy desperate to help my baby and today that happened to involve you.
I honestly don’t make a habit of calling helplines and crying for assistance. Sometimes I just don’t know how else to make my child better.
You see when I called you this was what my six-year-old was doing:
She is sick. Again. For four weeks now she has had a cough that just won’t budge. She is already underweight. The doctors say she has a chest infection and the day before I called she was given her second dose of antibiotics in just two weeks. No mum can bear to see their child unwell. It is like a stab to their own heart and they would do ANYTHING in their power to get them better. The thing is to get better my daughter needs to eat and drink. Unfortunately this is a real challenge at the best of times and a hundred times worse when she is sick.
She has a very limited diet. She always has done. The only two things she has drunk since coming off breast milk is cows milk and a certain brand of orange squash that happens to be made by the company who employs you.
The doctor said milk would make her condition worse. So that only left the juice. I went to make her some and realised we had just run out. Her dad popped to the shops for some. He couldn’t find any. So he drove to another shop. Same problem. We just could not understand why this was, so he tried a few more shops. Still no sign of the juice. I tried tempting my daughter with so many other drinks. She would not take anything and was crying for her favourite orange drink.
When Naomi gets something in her head nothing but nothing will shift it. She smells everything to make sure it is right before it passes her lips. She examines what it looks like and often feels the temperature and texture too. She has sensory difficulties which affect her eating. She has rigid thinking which means she likes things as they always are. She struggles with change. She needs routine in order to feel safe. She has a condition called autism. She wanted her juice and would dehydrate rather than drink anything else. My heart was breaking for her so I thought I would just call and ask if you knew where I could purchase some of her juice.
I wasn’t intending crying on you, honestly.
Then you told me the worse thing you possible could ever say. And that is why I cried.
You told me you had stopped making her juice and you had no plans to make it again. Just like that you broke my daughters heart. And that broke my heart.
In the six and half years of living with my children’s autism I have rarely been so desperate. I remember pleading with you to help me. I remember saying she has autism and yet you said there was nothing you could do. I had to hang up I was so upset.
Your company now see me as a pest. I have written on your social media sites about my daughter and created a storm you don’t like. Kind people from throughout the UK have been looking out for the juice, buying, posting, bringing it to my house and giving me online links to buy it. There is a massive autism community out there and we stick together.
Today it was my daughter and your company. Tomorrow it could be another child and another company.
It is not my daughter being stubborn or obnoxious refusing to drink anything else. This is autism. It affects children and adults. Change has to be gradual, supported and is a process, sometimes taking years. It can not be done when someone is unwell. Sometimes, despite everything we try, change still never happens until the person is ready.
You shook my little girls world. You devastated mine. I do understand you were simply the messenger, the call handler, the employee. So I am sorry you witnessed this mamma breaking down.
My world is fragile. My daughter is fragile. I just never realised quite how fragile we both were until I called you.
Thank you for understanding,
One stressed and emotional mum.
P.S. Naomi is now much better thanks to us getting some juice eventually. We took her to a shop today but she refuses to walk down the drinks aisle because her juice isn’t there anymore. And she keeps repeating ‘why can daddy not buy my juice?’.
I just can’t answer that one.